Category: Guilt

Food Allergy Mom Guilt and the Necessity of Self-Compassion

6/18/2022

Written by Paige Freeman, PhD., a FAC Directory-listed therapy provider and FAC advisor. More information about Paige and her practice at the end of this article.

Allergy moms: I have some not so great news. No matter how hard you try, how diligent you are, or how many plans you have- at some point your child will likely be exposed to their allergen. You are not going to navigate this journey perfectly, no matter how many precautions you put in place. And for many of us, even if we were to get it perfect we would still beat ourselves up. (For a deeper dive on this, read my friend Heather Hewett’s Allergic Living article here.)

Here are just a few things allergy moms feel bad about:

Introducing our child’s allergen too early
Introducing our child’s allergen too late
Introducing our child’s allergen the wrong way

Not being diligent enough
Being hypervigilant

Deciding to do OIT
Deciding to not do OIT

Going through a food challenge
Deciding against a food challenge

Not giving kids enough responsibility
Giving kids too much responsibility

Missing out on food related activities
Potentially exposing our child to their allergen at a social event

Thinking we did something to cause the food allergy
Thinking we did not do enough to prevent the food allergy

Do you notice a theme here? So many times in our allergy world, there are no good solutions because there are pros and cons to almost every decision. Adding to this is a lack of consistent messaging about how to manage food allergies and an overload of input from social media on the multitude of different ways families handle their own allergies.

Self-Compassion

Image Source: Pixabay

The degree of vigilance necessary in the management of food allergies is exhausting, persistent and is in constant flux depending on the situation and your child’s developmental stage. There will likely come a time when you miss something. When that happens, it is of the utmost importance that you show yourself some compassion.

Compassion is defined as being moved by the suffering of others.

Self-compassion is recognizing that your suffering is difficult and acknowledging the pain.

You can’t ignore your pain and feel compassion for it at the same time. If self-compassion is difficult for you, I’d like for you to think for a minute about how you talk to your child about their difficult thoughts and emotions, or about a mistake they have made.

Now imagine talking to your child in the same manner you talk to yourself about those same thoughts and emotions and missteps. As you picture talking to your child the way you talk to yourself, ask yourself some questions:

What effect do your words have?
Are your words motivating?
Are your words helpful?

How do your words affect their worldview and the way they conceptualize themself?

Notice, Name and Normalize

Image Source: Pixabay

So how do we develop self-compassion?
Start with the below exercise when you are experiencing difficult emotions, thoughts and feelings.

Notice:
Get curious about what your mind is telling you. Observe the thoughts, emotions, memories, etc. that are coming up. It is helpful to complete the sentence, “I notice my mind is telling me…” (Remember that you are observing your thoughts, not judging them).

Also notice what is going on in your body. Does your chest feel full? Do you have a lump in your throat? Are your shoulders tight? Butterflies in your stomach?

Name:
Put a name to what is happening. Maybe emotions of shame, guilt, anger, vulnerability, or self doubt are showing up. Maybe it is a feeling of deep tiredness. Maybe it is a memory of helplessness. Maybe the only thing you are experiencing is pain in your lower back.

Whatever it is, after you notice what is happening in your mind and body, then name it. For example, “I am noticing my chest feels heavy”, “I am noticing deep shame”, or “I am noticing regret”.

And then acknowledge the difficulty of it. Acknowledge that it is painful. Naming this can be as simple as, “This is difficult” or “This is exhausting”.

Normalize:
When we are in the midst of suffering, it is helpful to remember that suffering is a part of the human condition. Our highly evolved brains are hard-wired for suffering, and the more we try to avoid experiencing discomfort, the more it sticks around.

Although our specific circumstances are not always the same, humans have the shared struggle of deeply painful experiences. In the food allergy space, there are many moms out there feeling very similarly to you. And it is very difficult.

So when normalizing you may say to yourself, “This is painful and hard, and difficult emotions are a universal human experience” or “Humans are hard-wired to suffer sometimes. It is normal”

Final words

Remember that this food allergy journey is very challenging, and painful emotions including guilt are common. Please be kind to yourself. You are navigating something that is very difficult, and some self-compassion can go a long way towards healing and living a purposeful life.

Paige L. Freeman, Ph.D.
Dr. Freeman is a psychologist in Houston, Texas, and she practices telehealth in 29 states. She enjoys working with food allergy parents and adolescents in her practice. She is a food allergy mom herself, and likes writing about the psychosocial effects of food allergies on both individuals and the family system. To learn more go to paigefreemanphd.com or email paigefreeman@paigefreemanphd.com.

Looking for more on this and related topics? Check out:

Remember, support is out there if you need it!

Food Allergy Counselor Directory
Exploring Food Allergy Families podcast
Food Allergy Behavioral Health Resource section
allergy-specific therapeutic worksheets
Allergy Counseling Niche info for patients and allergists
Therapists: Learn about the Food Allergy Behavioral Health Network (FABHN) and about working in the allergy counseling niche

----> And don't forget to sign up to receive helpful allergy psychosocial tips and updates via email! Subscribers also get the free "Allergy Anxiety and Overwhelm Mini Guide"

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Understanding Allergy Parent Guilt

5/14/2022

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When we receive our child's allergy or medical diagnosis, we typically experience a variety of emotions - usually some that are pretty intense. It's while we are in that hurricane of emotions that our mind tries to become the anchor, looking for ways to make sense of this new diagnosis that we never wanted in the first place.

You see, our mind is a threat-seeking machine. It wants to locate and decrease all threats while increasing safety and predictability. And in order to help achieve that goal, our mind looks for answers and predictable patterns.

So when our child receives their allergy or medical diagnosis, we want to know WHY. “How did this food allergy or health condition develop? What caused it? How can I avoid more allergies or health complications from developing and keep my child safe at all times?”

But sometimes, the answer to why the allergy or medical condition developed is that there is no specific cause. Given that our mind wants actual answers, it often struggles to deal with that explanation. Therefore, this lack of clarity definitely doesn't make our mind feel safe because it leaves us with EVEN MORE uncertainty and unpredictability.

In the face of that ongoing uncertainty, parents tend to keep searching for answers. Our mind tells us that there just has to be some stone left unturned that explains WHY our child developed the allergy or medical condition!

It's in this quest to answer that elusive WHY that some parents engage in the “blame game” - blaming themselves for the allergy or health condition. This, of course, only enhances the feelings of guilt.

Since guilt is a behavior-focused emotion, it often leads us to believe that we did something wrong or bad. Therefore, playing the blame game leads us to believe that we must have done something (or NOT done something) that led to this diagnosis. Somehow, it must be our fault, even if there's no evidence to prove it.

Even without evidence to prove that the allergy or medical condition developed because of something we did or didn’t do, this answer somehow provides the certainty parents are looking for. It’s AN answer even if it’s not THE answer.

But then this faulty assumption leads to this unhelpful thought: "If I somehow made the allergy or medical condition develop, then I can prevent another allergy, an allergic reaction, or more complications from occurring by eliminating ALL risks for my child."

And it’s this uncomfortable belief that tends to send parents into an unhelpful pattern of control-seeking and over-avoidance, which leads to ongoing and quality of life-impacting anxiety and overwhelm (because we just can’t control everything!)

While guilt can push us towards unhelpful assumptions and thought patterns in service of finding certainty, predictability and safety, it’s important to notice when this is happening. It’s easy to stay stuck in this unhelpful guilt loop, but it is absolutely possible to experience guilt and not let it push you into the blame game.

One key tool that helps us from being pushed around by our feelings of guilt is: CURIOSITY

Exploring our feelings helps us develop a new perspective and a new relationship with them. Therefore, by getting curious about our guilt, it helps us exit the blame game and the unhelpful loop of regret, and develop an understanding of why else it might be popping up.

Exercise to Try: Get Curious With Your Allergy Parent Guilt
Rather than focusing on finding a cause of the guilt, use these questions below to help you begin to view guilt differently and to redirect it into more mindful and purposeful thoughts and actions:

EXPLORE ITS PURPOSE: What else do my guilt feelings want me to know or do differently going forward that may help me and my child feel more empowered to navigate life with this diagnosis?
IDENTIFY WHAT'S FUELING IT: What’s at the core of the anxiety I’m feeling that may be fueling my guilt feelings?

NOTICE RELATED EMOTIONS: What other emotions/feelings are connected to my guilt feelings? How do they impact the guilt?
CREATE A NEW NARRATIVE: Can I use this new understanding of my guilt feelings to create a new narrative that isn't based on needing to make myself feel bad about actions I took or didn't take?

TAKE ACTION / MAKE CHOICES: What actions can I take to help support this new, more workable narrative about my feelings of guilt? What information and guidance will help me better navigate this guilt feeling?

And if you find that this exercise uncovers elevated anxiety that your guilt feelings have been saving you from, here are some allergy anxiety-focused tools and information that you may find helpful:

FINAL THOUGHTS....
All emotions are part of the human experience, even the ones we don't enjoy, such as guilt. Rather than get upset with the emotion and aim to keep yourself from ever feeling it again (because you'll spend tons of energy working toward that unrealistic goal), work towards exploring and understanding its purpose. THEN, you'll be able to find a way to work with or around it rather than being kept captive by it.

And if you're needing more allergy-related psychosocial support, don't forget to check out the Food Allergy Counselor Directory, the Exploring Food Allergy Families podcast, the Food Allergy Behavioral Health Resource section, the allergy-specific therapeutic worksheets, and to sign up for weekly allergy life, mindset and anxiety tips via FAC Corner emails!

Do you value the Food Allergy Counselor Directory and the support it provides to the allergy community? Want to see it expand with additional providers? Contact founder Tamara Hubbard, LCPC for sponsorship opportunities!

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The emotional side of food allergy treatments

11/24/2019

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Note: I'm not an allergist, so this piece should not be taken as medical advice. However, I'm a licensed clinical professional counselor that often works with those managing food allergies, as well as a parent of a child with a food allergy that has taken part in a clinical trial and follow up treatment. I've experienced the feelings that many parents feel while pursuing treatments, but also have the clinical background to know it's important to explore any and all emotions while pursuing food allergy treatments. Please always be sure to communicate all thoughts and feelings with your allergist or treatment team. [Article Updated July 2021]

......HOPE......

Photo Credit: Pixabay

When we think of pursuing food allergy treatments, hope tends to be the leading emotion. Hope for positive outcomes. Hope that pursuing the treatment will result in the ability to tolerate accidental, small or maybe even large amounts of the allergen. Hope that quality of life will improve once in maintenance.

However, the reality is that food allergy treatments don't always go as planned. With oral immunotherapy (OIT) for instance, some can tolerate doses, while others can't. In cases where OIT doesn't go smoothly, working with your allergist on adjustments, such as changes in dosing amounts, dosing foods, or time of doses may help resolve potential roadblocks.

But SOMETIMES, tweaks and changes don't resolve the issues. Whether it's for medical reasons or due to psychological barriers, sometimes food allergy treatments come to a screeching halt. Therefore, it's no surprise that some of the emotions that may follow this scenario are...

.....FEAR......FRUSTRATION......DESPERATION.......GUILT......

It's these less popular emotions I'd like to explore. I'm fully aware that this piece may be encouraging you to visit thoughts and feelings that may feel better staying put, stuffed down deep inside. While exploring these emotions may make you feel vulnerable and uncomfortable, it's important to process them, as they themselves can create food allergy treatment roadblocks if left unchecked. Read through some of the thoughts and feelings below to help identify if any have been involved in your journey so that you can process them and move forward.

*NOTE: While the content below is helpful in exploring thoughts and feelings, please be sure to always discuss any treatment-related thoughts, feelings, decisions, or potential roadblocks you're experiencing with your allergist or treatment team.*

FEAR

Fear may be brought on by the idea of navigating anaphylaxis, or even minor reactions as part of the food allergy treatment journey.
The fear may be due to the thought of returning to strict allergen avoidance. Sometimes the hope for food allergy treatment success changes your perception regarding the option of avoiding the allergen. Returning to this approach, one that you've likely employed for years before considering treatment, may suddenly become frightening and even unimaginable.
Perhaps the fear is about making the wrong choice. Deciding whether to push through treatment roadblocks, to pause, or even to stop treatment can be a tough choice. While your allergist needs to be a crucial part of this decision-making process, your thoughts may run wild, leading you down rabbit holes filled with worst-case scenarios and "what if" worries. In this case, it's important to check those worries with your allergist in order to get factual information that will help you make these decisions.
Maybe the fear is driven by the loss of hope. Food allergy treatment involves lots of emotions, both positive and negative. Therefore, it can feel like falling off the cliff of hope if treatment doesn't pan out the way you envisioned. When food allergy treatment doesn't go as planned, or the decision is made to stop, you have to grieve that loss - for yourself and/or for what you had envisioned for your child.

FRUSTRATION

With all of that hope, it's completely understandable to feel frustrated if your food allergy treatment isn't progressing smoothly, or if you need to stop treatment. Frustration may even give way to disappointment, annoyance, and anger.
If your parental goal is to push through treatment roadblocks, but your child doesn't share that same goal, frustration may arise. While you might not want to admit it, you may even be feeling frustrated with your child for not seeing the bigger picture and wanting to continue treatment. But the truth is, if your child is the one receiving the treatment, they need to be on board, otherwise, treatment itself may become a downright battle of wills. If you find yourself in this scenario, it's best to have an open and honest conversation with your child, exploring pros/cons of treatment, why he/she is finding it difficult, and what he/she might find helpful. Approach it as a team, one that includes your allergist - together, you're going to attempt to find a solution that works, even if that solution means taking a break or stopping treatment.

DESPERATION

Sometimes, when treatment has become difficult and/or you or your child wants to stop, the feeling inside of you is one of complete desperation. In the case of your child receiving treatment, the desperation may be about helping him/her to "get it" - to see the bigger picture and understand the gains and freedom continuing treatment might allow. The desperation may drive you to burn the midnight oil, researching foods to mask the taste, approaches you can utilize to encourage continued treatment - anything to just keep your child willing to take part in the treatment. While it's wonderful to problem-solve and look for solutions to help your child reconsider, the question becomes: How hard do you push, and at what emotional expense? The reality is, if you've discussed the roadblocks with your allergist, tried a variety of tweaks, and are still finding that your child isn't a willing participant, then it may be time to consider taking a break or stopping treatment all together....and that can be a hard pill to swallow. (Note: No treatment decisions should ever be made without discussing with your allergist first).

GUILT
Guilt may come in two forms: Guilt for not pursuing a food allergy treatment, and guilt for pursuing a food allergy treatment. Let's explore both separately.

Guilt for NOT pursuing a food allergy treatment - With private practice food allergy treatments become more readily available, including the use of Aimmune's Palforzia, there are options for people to consider besides just allergen avoidance. However, treatments may not be a fit for all, whether it's due to factors such as age, exclusionary conditions, or personal choice. With that said, even if someone chooses not to pursue a food allergy treatment, there may still be guilty feelings. Especially for parents who may read others' success stories, they may wonder if they're making a mistake by not pursuing treatments and opting to continue allergen avoidance. In addition to questioning their decision, they may feel treatment enthusiasts may even judge their decision not to pursue it. But at the end of the day, the decision whether or not to pursue food allergy treatment is a very personal one that should be made by the individual/family and their allergist. No one should feel they need to defend their reason for choosing not to pursue treatment.
Guilt FOR pursuing a food allergy treatment - Just as some wrestle with guilt for deciding not to pursue food allergy treatments, some may find themselves feeling guilty if they do pursue treatments and the outcome isn't what they expected. When treatment results in developing medical complications or anxiety that begins to impact daily life, parents may feel guilty for having pursued treatments in the first place. However, hindsight is 20/20 and no one has a crystal ball. It's important to remember that you likely researched the treatment option, discussed it at length with your allergist before beginning, and felt comfortable enough to pursue it. Beating yourself up about the decision or the outcome doesn't do any good, so focus on forgiving yourself, finding solutions, and on moving forward.

use this "F WORD" when pursuing
or taking part in food allergy treatments

I can almost hear the gasps when reading this proposal! Don't worry - it's not the word you're thinking of. Instead, the "F word" when pursuing food allergy treatments is......

FLEXIBILITY!

But what exactly does it mean to apply flexibility while pursuing food allergy treatments?

Being flexible rather than rigid about food allergy treatments, which may include challenging initial assumptions about treatment, as treatments aren't one-size-fits all;
Actively and consistently communicating with your allergist in order to allow for flexibility and change in treatment approaches if deemed necessary;
Challenging and shifting your mindset, whether it be your mindset about pursuing treatment, navigating the journey, working through potential roadblocks and outcomes, or the possibility of needing to stop treatment;
Being compassionate with yourself and your child, understanding that there may be a variety of thoughts and emotions you may experience during the food allergy treatment journey (and not all will be warm and fuzzy);
Allowing the flexibility to seek out emotional support via a licensed clinical behavioral healthcare provider if you feel like you and/or your child may need or benefit from the support;
Allowing others to navigate their own treatment journey without offering too much pressure or judgement.

Final thoughts....

Don't ever hesitate to explore thoughts or emotions with your allergist that may arise before, during, and after treatment. Feelings and thoughts don't always need to be acted upon, but especially if you're noticing that they're impacting your or your child's approach to treatment, it's important that you let your allergist know so it can be explored together.

For those that have read my previous pieces or have followed my work within the food allergy community, you know that a key component is focusing on empowerment and resilience. While this piece may force some to uncomfortably explore tough feelings, it is meant to offer "food for thought" to help people truly be honest with themselves - a necessary step in developing resilience. By recognizing/working through tough feelings, and utilizing a flexible rather than rigid approach to these emotions, you'll find your way back to hope again.

Below are helpful related resources to help during food allergy treatments:

Allergy-specific therapy worksheets: Focused on addressing allergy anxiety, fear, and worries, including for oral food challenges and treatment
Exploring Food Allergy Families podcast episode: Episode 8 - FA Treatments: Tips to Navigate Emotions, Decisions & Power Struggles; also check out other helpful episodes focused on addressing allergy anxiety, challenging thoughts, and preparing for oral food challenges
FAC blog post about oral food challenges: Helpful tips for OFCs, which are often part of food allergy treatments
Food Allergy Counselor Directory: Find an allergy-informed therapy provider near you. Providers now listed in the US, Canada, Australia and England!

UPDATE:
It may also be helpful to check out this post on a post-anaphylaxis tool known as T.R.A.C.E, which is a compass guiding you back to confidence after allergic reactions, as well as these Oral Food Challenge worksheets which help prepare before the appointment, offer helpful reminders for the day of, and prompts for processing after the food challenge. (There are separate worksheets for kids and teens/adults). Also check out

You can find these worksheets on the Therapeutic Worksheets page here on the Food Allergy Counselor website.

You may also want to read or check out the following:

(Some research recommendations below may only be abstracts or summaries, which require purchasing to gain access to the full content.)

Changing Patient Mindsets about Non–Life-Threatening Symptoms During Oral Immunotherapy: A Randomized Clinical Trial - JACI In Practice, May-June 2019
The Effects of Food Allergy on Quality of Life (QOL) - Department of Paediatrics & Child Health, University College Cork, Cork, Ireland
Food allergy: Children's symptom levels are associated with mothers' psycho-socio-economic variables - Journal of Psychosomatic Research, January 2018
Quality of Life in Food Allergy Patients and Their Families - Pediatric Clinics of North America, December 2015
The Current State of Oral Immunotherapy (OIT) for the Treatment of Food Allergy - American Academy of Allergy, Asthma & Immunology (AAAAI), September 2019
Peanut Sublingual Immunotherapy: An Alternative Approach to Peanut Allergy Treatment - American Academy of Allergy, Asthma & Immunology (AAAAI), September 2019
FDA to Review Viaskin Peanut Patch for Possible Approval - Allergic Living Magazine website, October 2019
Panel Backs FDA Approval for Aimmune's Peanut OIT Drug - Allergic Living Magazine website, September 2019
Food Allergy Thinking Traps worksheet - Tamara Hubbard, MA, LCPC
Food Allergy Mindset Matters worksheet - Tamara Hubbard, MA, LCPC
The Food Allergy Counselor Directory

Connect with Tamara and the Food Allergy Counselor (FAC) via social media:

1 Comment

Food Allergy Mom Guilt and the Necessity of Self-Compassion

Self-Compassion

Notice, Name and Normalize

Final words

Understanding Allergy Parent Guilt

The emotional side of food allergy treatments

use this "F WORD" when pursuing
or taking part in food allergy treatments

Final thoughts....

You may also want to read or check out the following:

Archives

Categories

FAC Resources

For THERAPY Providers

About

Food Allergy Mom Guilt and the Necessity of Self-Compassion

Self-Compassion

Notice, Name and Normalize

Final words

Understanding Allergy Parent Guilt

The emotional side of food allergy treatments

use this "F WORD" when pursuing ​or taking part in food allergy treatments

Final thoughts....

You may also want to read or check out the following:

Archives

Categories

FAC Resources

For THERAPY Providers

About

use this "F WORD" when pursuing
or taking part in food allergy treatments